#pedcsm

This is my son, Aaron, when he was 4 years old. He was diagnosed with a malignant brain tumor called anaplastic medulloblastoma.  

The first neurosurgeon who looked at my son’s MRI declared that my son would not survive brain cancer because the tumor was too close to his brain stem. This location meant that not enough of his tumor could be removed for a complete resection.  If there is visible tumor left behind after surgery, the chances are very low to successfully treat cancer with chemo and radiation.  

So after two long weeks in Pediatric ICU, we came home and my 4-year-old son couldn’t walk or talk.  I did what most parents do these days: I googled it.  

After searching the internet, I found a clinical trial on the National Cancer Institute website www.cancer.gov for an experimental treatment at St. Jude Children’s Research Hospital. I applied online and we were accepted into a clinical trial within days of my online application.  Clinical trials must begin within 30 days after surgery, so my ability to find this opportunity online so fast helped to save his life.  

Fast forward to today:  my son, Aaron, is 5 years cancer free, thanks to that clinical trial at St. Jude Children’s Research Hospital in Memphis, TN.  I am forever grateful for the miracle of hope we were given by St. Jude.  I am honored to share all I have learned from my personal experience on my journey, and inspired by every story I hear about other children who fight the good fight. 

How Nature and a 9-Year Old Are Revolutionizing Cancer Treatment: Dr. Ji...

Bringing Light from Project Violet on Vimeo.

ReMission 2 is a new gaming app designed to make pediatric cancer into child’s play.  On the one hand, this sounds like a super cool way to help kids cope with childhood cancer by turning it into a game. My son, age 9, loves video games and I’m sure he would love to zap cancer cells like they are the bad guys. But I wonder if this type of game is the best way for kids to deal with cancer psychologically.  

Could a game like this give kids an unrealistic expectations or a false understanding about fighting cancer?  Pediatric cancer patients come in all ages right down to infants and toddlers, and children are not just miniature adults. Depending on their age, they have very vivid imaginations and still believe in magic.  When my son had cancer, the child-life specialist at St. Jude warned us not to describe cancer to him as a “monster” or an “animal”or a “bad guy” living inside him because it could give him nightmares.  

Many cancer families, ours included, tend to talk about pediatric cancer treatment in terms like “fight” and “battle” to describe our child’s illness. We tell our kids that they will “beat cancer.”  We call children “cancer warriors.”  We say “fight the good fight.”  We hear other people say these things and we adopt the language.  

But after we returned home from the hospital, I read how these words aren’t really helpful to use with kids to describe cancer.  Think in terms of opposites.  

If getting better equals a “win” or a “victory,” then the opposite is also true. When children don’t get better, or if they relapse then they may interpret the setback as their fault for not “fighting hard enough” or not “winning the battle. Cancer is a long-term illness, and there are many hurdles along the way. Sometimes there are going to be setbacks like infection or low blood counts that will delay treatment.  

Talking to kids about cancer is complicated.  There’s a lot to consider in choosing the right words.  Fortunately, our son was only 4 when he was diagnosed with a malignant brain tumor, so he  blessed with ignorance. His biggest concerns were the toys in the waiting room on most days.  His greatest fears were pokes and yucky tasting medicine.  We did not tell him he had cancer or that he might die.  We never explained to him that he would lose his hair.  We just didn’t know how to explain it to a 4 year old boy.  

One day, about 3 weeks into radiation, he woke up and his hair was gone. He looked in the mirror and said, “Dad, I look just like you now!  This is great!” Which is totally not what we expected, but we went along with it.  We just simply told my son he was sick and the doctors were going to make him better. He accepted that simple truth, and he didn’t worry about the rest.  The way I see it, that was my job to worry about everything and his job to get better.

Most apps I read about for childhood cancer make me wish I had access to this technology when my son was in treatment, but not this one.  I think if my little boy knew had to kill the bad guys living inside his body this would have opened up a whole can of worms that I was not ready to talk about.  He may have been perfectly fine with it, but I’m not so sure about me.  

With all the fuss in social media lately about football players, I just wanted to highlight the good deeds of one team, the Oregon Mighty Ducks, who wore gold in September on their uniforms for Childhood Cancer Awareness Month. Even better, the designs were made by kids who are childhood cancer survivors working together with designers at Nike to fundraise for their local pediatric cancer hospital in Oregon.